Vent about Permanent Neuropathy
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Hi Ladies..................I glad I found this thread. I finished chemo on Aug 13. I had 4 doses of AC and 4 does of Taxotere. I began having mild tingling and numbness in toes and finger during Taxotere. About a month after final chemo I was up all night with freezing toes and burning pain that moved from toes to heel. It would come and go over next few weeks. Now I feel numbness and tingling daily. It is even more annoying since I had BMX and DIEP flap reconstruction 2 weeks ago. ..................... When I discussed it with MO last month,he did not seem to have any answers or recommendations.
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Gwenny, if your MO doesn't know about chemo-induced peripheral neuropathy, he should not be allowed to use these very powerful drugs!!!! (OK, rant over). Seriously, though, it sounds like a typical case of CIPN, and there are LOTS of approaches to try to manage it. Ask for a referral to palliative care, pain & symptom management, or a medical toxicologist. There is a lot of information in the nursing literature about this, but not so much in the medical literature. I am using a topical cream that is compounded and has given some relief from the burning/tingling but not from the pain associated with tapping of the fingers on keyboards, etc. But I will take what I can get! I think I posted on here before about the researcher - Debra Barton I think is the name - she is a nurse who has done a lot of research in this area. There are also lots of meds you can try, but I had reactions to most of those little pills. Best wishes!0 -
Miss Linda...what type doctor prescribed the cream......mine just increased the Neurontin today because I was freaking out at him...lol
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I saw a medical toxicologist. They are hard to find because very few of them actually see clinic patients for long term, most are emergency docs who just see acute poisonings. But a good neurologist who works with diabetic neuropathy might be willing to help you get the cream. My doc talked with Dr. Barton or someone in her practice- she is an RN, PhD. My doc and the compounding pharmacist got the "recipe" for it, then used a different base that is absorbed better for me. A good pain or palliative care doc might also be willing to work on this for you. I tried the neurontin but just could not tolerate the SEs. Best of luck in finding some help near where you live.0 -
Thank you Miss Linda
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Linda - I was wondering if you know the recipe for your topical medication. I would like to try it too! When I look it up, I see numerous medications that can be added to the compound depending on the individual patient - gapapentin, amitriptyline, lidocaine, ketamine, .... There is a long list. I think my MO would give me a prescription if I told her what I want in it. What recipe is working for you? I like the idea of something topical that won't give me the sedated feeling I'm getting from the oral Gabapentin.
ChickD - Looks like we are around the same timing with our radiation and neuropathy. I'm sending you my wishes for an easy radiation course and improvement in your neuropathy!
Gwenny - I feel for you. Linda had some great suggestions if your MO doesn't know where to start. I think Gabapentin is the usual med they suggest trying first. It sounds like it's a matter of trying one thing after another until you find what works for you.
KittyDog - I totally understand where you are coming from when you talk about the heat. I went through chemo during very warm weather and the heat seemed to make the neuropathy worse. I have been wondering if I'd done chemo when the weather was colder if I'd ended up with such bad neuropathy. I hope you're feeling better. It sucks being sick on top of all of this!
kmmd - Thanks for making this thread. It looks like you started it over 2 years ago. Since my doctors keep telling me that it should get better over time, I have to ask - have you noticed any improvement over the past couple of years. It would be nice to hear that there really is a chance of improvement, even if it does happen slowly! Heres hoping that it has improved significantly!!!!!0 -
Gwenny - I finished chemo on Aug 1, 2012, so we can somewhat relate to each other on dates, but one year apart. Things really improved between the worst of it, though I can't give you exact dates when it was at it's zenith, until January. By January, it no longer kept me up at night. It was unbearable at times, but improvement has taken me to a livable level of numbness and burning. I can walk considerable distances now, though burning will commence after about 1 hour - just learned to live with it. The softer the surface, the better. Sand is best! (I hike a lot on dirt roads.) There is hope and maybe some slight improvement since January. We also had similar chemos, though I had 5 doses of carboplatin after that (also a neuropathy villain).0 -
October is breast cancer awareness month...get those puppies checked!
Hope this made everyone smile!
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I think Debra Barton is about to become my next best hero. This is just intolerable. I wrote her a pleading email with all my info. Let's see if I can put a team together and get my feet back. I'll take halfway dang it.0 -
kirklandgal, I'm sorry to say no. I had an escalation of symptoms for the first several months after chemo and then it leveled off but never got any better. The only improvement has been my MO finally stopping saying maybe it will get better after 3 years went by. A couple of years ago I was so frustrated I started the thread. You can probably get a feel for that in the original post. I've accepted a change in work which came with a much decreased standard of living. I've given up many activities I used to love. So really most days I concentrate on the good in the here and now and not think about how much neuropathy has changed my life.0 -
Hi Deb,
Good luck with your treatment. I hope the A/C knocks your cancer out and leaves you feeling tired but intact, neuropathy-wise.
I had a course of acupuncture at Dana-Farber. It eased the pain in my knees (osteoarthritis) and was a lovely, calming experience, but it didn't help the neuropathy in my feet at all. I've seen a couple of specialists and tried Cymbalta and gabapentin. Neither helped with my neuropathy.
At some point I may try other meds, but for now I'm pushing ahead with exercise (I'm lucky that I'm able to walk for 30 mins. every day) and trying every shoe and insole known to man to find something I can wear without pain and stress. I take Advil and the occasional Vicodin to ease my aching feet.
Good luck and good health to you, Deb.0 -
Deb, cytoxan has also been implicated in neuropathy. If you already had CIPN, you might be at higher risk for it from other drugs. Mine has been exacerbated by Cipro, and maybe by one of the meds I am on now - letrozole (Femara) or everolimus (Afinitor) as my fingers have had more tingling, then started having the "hit by a hammer" pain a few weeks ago, and my teeth all hurt like they did during chemo. At least I can eat without much more discomfort to them, unlike during and right after chemo.
Debra Barton, RN, PhD has researched and published a lot about this and other symptoms related to chemo and cancer. Her one article is at http://www.ncbi.nlm.nih.gov/pubmed/21814197?dopt=Abstract and in it she reviews the lack of evidence for ANY of the usual drugs to help CIPN, including gabapentin, lyrica, the tricyclic antidepressants, etc. But some of the work for diabetic neuropathy, so the thought is maybe they will work for CIPN.
But here is a problem: in clinical trials, if something only works for less than half of the patients, it is deemed "not effective." But for those patients for whom it DID work, it was definitely effective IMHO!!!! And just because a drug works for 90% of patients, if you happen to be the 10% that it doesn't work in or who have severe SEs, then it is NOT effective! So it is still a trial and error thing, finding the plan that will work for the individual patient, because we each have a unique genetic makeup, metabolize drugs differently, have different drug receptors, our tumors have different drug receptors, etc etc etc, so bottom line is, keep trying, and eventually maybe SOMETHING will work for you!
I have tried acupuncture, and it did not relieve the burning/tingling pain of CIPN, but it DID give me the deepest relaxation I have ever had in my life! Wonderful from that perspective!
The only relief I have had is from the topical cream I am using. The "recipe" for it came from Dr. Barton's work and clinical trials, but my doc and the compounding pharmacist "tweaked" it to make it more concentrated so I can use less of it and get it rubbed into my fingers in less time. It is a mess, but I am sticking with it for now - it took about 7-10 days to feel relief, using it twice a day. Now I use it once a day faithfully, and don't worry if I miss the second dose because it is pretty stable for now, and I really don't expect much more improvement. Sure wish there was something to take away the "hammered" pain ...
I am with kmmd - trying to find something good to do each day, living without the pleasures I had in my previous life before BC. When I think too much about what I have lost, I get very depressed, so I try to think about what I can do each day to have some fun, some beauty, some peace, and try to find something to be grateful for. I am grateful for the love I find everywhere in the people I meet, grateful for a crisp fall day, grateful for my DH and family, grateful for a hot shower when the pain is bad - even if I am not truly grateful for life itself.
If anyone needs more info on the topical cream, PM me. My medical toxicologist and the pharmacist have worked to help me, and your own doc may be able to talk with either Dr. Barton or my doc to get a better idea of this cream's ingredients and use. The pharmacist here uses a different base than the clinical trial used.0 -
deb, your tons of research revealed the dearth of understanding and support.
There are too few Dr Barton's. RN 's who care enough to go further, get their degrees, and learn more and not be satisfied with dumping the status quo on our misery with no damn idea whether it helps.
That includes oncs, neurologist, pain specialists, diabetic folks who think its the same crap.
We need to elevate the Dr Barton's to a respected resource that our oncs know about and seek out.0 -
Miss Linda...I would love the " recipe".... do you think your people would give us the mix in writing?
I am treated at the Cleveland Clinic and we are still experimenting with continual increase in gabapetin with no relief yet...I'm getting realy cranky...lol
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ChickaD...I found a cream by Magnilife called Diabetic neuropathy foot cream...it does not take the burning and tingling away 100% but it helps...for me if I cut the sugar out of my diet it helps too. I am by all means no expert...just trying things to see what I can do to lessen pain because for me it turns into RLS and then a panic attack! Hope this helps I have never posted here just read a lot...I apologize if I am butting in.0 -
Thanks Miss Love...I'm kinda new here too...but you are more than welcome! Thanks for info!
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For Deb:
Nervous system
Nervous system side effects (ototoxicity and peripheral neuropathy) have been reported after cyclophosphamide (the active ingredient contained in Cytoxan) was used with other antineoplastic agents (including cisplatin and carboplatin, drugs often associated with ototoxicity). Other side effects include asthenia, dizziness, depression, or headache.
http://www.drugs.com/sfx/cytoxan-side-effects.html
I had also looked this up in some other sources that I no longer have access to, and there is an association, but no proven cause/effect. So your docs may be right - but they may also not be right. Do you have other risk factors for neuropathy? I know that when mine was exacerbated by cipro (or one of those antibiotics) the NP and BS sort of poo-pooed me, too, and this year the FDA put warnings on all the fluoroquinolones that they can cause peripheral neuropathy! So I think the docs have no real understanding of how these drugs cause nerve damage (there is a lot of research going on here, and I have a couple of colleagues who are actively involved in this, but there just are no real answers right now!) and it is easier for them to ignore it and believe that they are helping us "beat cancer" but not acknowledging that they are also creating disability in the process.
Have another talk with your doc, ask him to talk with a knowledgable pharmacist to do some digging and research, and find some studies that will either put your mind at ease or educate them or both! I don't want to upset you, am so sorry that I might have caused you to become more angry and anxious by my rather careless or cavalier comments about cytoxan. Truly, there IS an association, but it has NOT been PROVEN to CAUSE CIPN, because it might just be the other drugs it is used with. I don't know that it has ever been studied by itself, but that is what the MO and pharmacist should be looking for in their research before they ignore your situation.
Chickadee, you are so right about making Dr. Barton known to our own docs - that is how I managed to get my med tox doc to contact her and they had several conversations on how to proceed to take care of ME, not just an abstract "patient". I do know that my doc took a LOT of time to call, research, call again, make calls to the pharmacist, make calls to the insurance company, etc. She is a jewel, one of only 2 providers that I absolutely trust. (Now if I could just find someone like that for this darned LE!!!)
ChickaD, the abstract from Dr. Barton is below. Basically, they use a dermatologic base (my pharmacist uses a different one than in the research) with baclofen, amitryptaline, and ketamine. I think the proportions in mine have been adjusted to make it doubly concentrated so I only have to use a smaller amount of the cream to get the same amount of the active ingredients absorbed. If you talk to your doc and he/she wants information on what mine uses, please PM me and I will give you the contact information.
Support Care Cancer. 2011 Jun;19(6):833-41. doi: 10.1007/s00520-010-0911-0. Epub 2010 May 25.A double-blind, placebo-controlled trial of a topical treatment for chemotherapy-induced peripheral neuropathy: NCCTG trial N06CA.
Barton DL, Wos EJ, Qin R, Mattar BI, Green NB, Lanier KS, Bearden JD 3rd, Kugler JW, Hoff KL, Reddy PS, Rowland KM Jr, Riepl M, Christensen B, Loprinzi CL.Source
Mayo Clinic College of Medicine, 200 First Street, SW, Rochester, MN 55905, USA. Barton.debra@mayo.edu
AbstractBACKGROUND:
Chemotherapy-induced peripheral neuropathy (CIPN) is a troublesome chronic symptom that has no proven pharmacologic treatment. The purpose of this double-blind randomized placebo-controlled trial was to evaluate a novel compounded topical gel for this problem.METHODS:
Patients with CIPN were randomized to baclofen 10 mg, amitriptyline HCL 40 mg, and ketamine 20 mg in a pluronic lecithin organogel (BAK-PLO) versus placebo (PLO) to determine its effect on numbness, tingling, pain, and function. The primary endpoint was the baseline-adjusted sensory subscale of the EORTC QLQ-CIPN20, at 4 weeks.RESULTS:
Data in 208 patients reveal a trend for improvement that is greater in the BAK-PLO arm over placebo in both the sensory (p = 0.053) and motor subscales (p = 0.021). The greatest improvements were related to the symptoms of tingling, cramping, and shooting/burning pain in the hands as well as difficulty in holding a pen. There were no undesirable toxicities associated with the BAK-PLO and no evidence of systemic toxicity.CONCLUSION:
Topical treatment with BAK-PLO appears to somewhat improve symptoms of CIPN. This topical gel was well tolerated, without evident systemic toxicity. Further research is needed with increased doses to better clarify the clinical role of this treatment in CIPN.- PMID:
- 20496177
- [PubMed - indexed for MEDLINE]
- PMCID:
- PMC3338170
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Damn ladies. Cytoxan & neuropathy??
I completed 6 rounds of taxotere & carboplatin along with Herceptin & Perjeta on August 7th and the ongoing neuropathy is horrible. At surgery in September the tumor was still to big to go directly to rads so now I'm doing AC - first round on 10/30. I too was told neither of these would make the neuropathy worse, but I found the statement below on "DrugsInc". I'd even told my doc I wouldn't do Perjeta when we re-start Herceptin in January because of more possible neuropathy damage. Maybe Cytoxan only causes problems when given in conjunction w/taxo or carbo? But how much do I still have in my system? Any info will be greatly appreciated.
Nervous system side effects (ototoxicity and peripheral neuropathy) have been reported after cyclophosphamide (the active ingredient contained in Cytoxan) was used with other antineoplastic agents (including cisplatin and carboplatin, drugs often associated with ototoxicity). Other side effects include asthenia, dizziness, depression, or headache.0 -
oh Deb, I'm so upset to hear you were so proactive and now are having trouble. Can you talk to them about dose reduction? I let my MO's practitioner talk down to me that I couldn't be really getting neuropathy and I regret that every single day.
I had an amazing experience yesterday. A young resident saw me in clinic before my doctor came in. He looked me in the eye and asked me to describe what neuropathy feels like to live with. It felt so satisfying to have someone ask and really listen. Didn't help the neuropathy but it sure the heck helped me!0 -
Deb, did you ask them what MAY be making your neuropathy worse, if it isn't the A/C? Let them figure that one out, and then you can proceed with more confidence. Tell them this is YOUR LIFE, not just the length of it, but the quality of it!!!! Tell them you are miserable, that you don't trust them unless they can figure out what is causing your problem, and ask them to help you. Sometimes a cry from the heart can soften the staunch clinical face you see before you ... I did this with my MO this week regarding the LE situation - between the CIPN and LE my quality of life really sucks, and I told her I was begging her to help me find some help because life is just not worth it most days, and I am seriously considering discontinuing treatment, even though it is actually working for now. She responded warmly and positively, and even though she couldn't offer a definitive plan, she is helping me work through options. Best wishes to you - I wish there was a better way to walk this path!0 -
Linda: You're so good at research. Did you find studies that definitely implicate Cytoxan w/neuropathy?0 -
I have only had my CIPN or two months BUT because I had fibromyalgia (FM) for eight years going in to the chemo, it was something I really worried about. I thought I was being very conservative and watching my neurological symptoms like a hawk. I only had five rounds of a platinum drug when I was began getting some unacceptable symptoms (including vision disturbances, besides hand and foot) and so I skipped the platinum drug on round six. Took one more dose in round seven, then quit platinum entirely. It wasn't until two months later that I got the CIPN I now have. I like to describe the pain as my feet being in an ice shanty, with an elephant stepping on them. When I am not having too much pain, it is just a 50% numbness that is mildly unpleasant. I know my balance is affected too and that is disturbing.
Well, I guess I am in the category of someone who's CIPN may yet reverse itself. I decided to post here because I went for some PT today that might help. It is called Anodyne Therapy, and some of you wrote of this a month ago. It is a a machine that uses infrared energy. Does it work? Don't know yet, this was my first time today. It has helped with diabetic neuropathy, with both pain relief and with lessening the numbness. So, I am giving it a shot. I was offered the drugs that you all have mentioned and decided to pass on them as I am well familiar with how most of them affect me and am not looking to change my brain chemistry at the moment. I'm going to bookmark this thread so I can come back and report on my experience with the Anodyne machine, whether I notice any effect or not. At this point, I can't really recommend it to you, but I will gladly be a guinea pig since my insurance does cover it.
p.s. I've been taking B-6, B-12, and L-glutamine for the past two mos. and my CIPN has slightly worsened so far.0 -
I have no idea if this could possibly help... but I'm gonna post it just in case...
I recently - and quite by accident - discovered that capsaicin is ... AWESOME.
I've had bizarre nervy sensations around my bmx scars for a while - especially on the side on which the sentinel node biopsy was performed. AND I won some stuff called embrocation at a recent bike race (YAY!), which contains capsaicin. Don't ask me why, because I honestly don't know why, but I applied a bit to my bmx scars and the skin around the scars... The first few times, it got really hot hot hot feeling... but ... everything has calmed down. It all feels soooo much better! To the point that I now realize that I had more pain that I was in touch with. WHOA.
So, I am left wondering if capsaicin containing cream or something like warming embrocation (search for embrocation - you'll find it) might help out with neuropathy?
I seriously lucked out with regard to neuropathy - a friend recommended I do glutamine with every cycle, and I did do glutamine with 15 out of 16 cycles... and I have very little = just a bit in a couple of toes - nothing like what some of you are dealing with. But, that bizarre untouchable pain - that I've had in my arm pit and shoulder blade... and along my scars... That I've had... and the capsaicin embrocation is proving to be a real game changer for me. Everything feels better.
OK - I do hope that might help someone. It might not... but it might... I especially wonder for anyone who needs to use heating blankets / pads in order to prevent pain due to exposure to chilled air... Maybe embrocation could eliminate that need?
Good luck...
PS - if you decide to use it, keep it out of your eyes... I have touched my face near my eyes after applying ... and ... uhm ... regretted it. It's a few minutes of ticked off eyes - nothing serious - definitely not comfy.0 -
Hi all i am also feeling so cheated by the onco who gave me the chemo but never really seams to have any concern regarding the numb feet i ended up with. My hands improved so all she keeps saying is give it another year it should be ok by then.
best of luck to all of you
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I used glutamine, too, but still got neuropathy. Might have been worse if I hadn't used it? Not sure how much good it does, but on theoretical grounds, it should help.
I tried capsaicin, too, for the surgically-induced nerve damage, but unfortunately it sensitized my skin so that even a lukewarm shower felt scalding hot on that area. *sigh* Sure wish this body would respond to these things the way it is SUPPOSED to!!!!
MinusTwo, I did a little more digging on the cytoxan. It is a nitrogen mustard, works at the DNA level, more effects on the T cells, but many cells have a high concentration of an enzyme that protects them from its toxic effects, and I cannot find whether nerve cells have that enzyme or not. So I suspect it may indeed NOT be a contributing factor to CIPN, despite the source that I found and posted on the last page. I apologize for the misinformation and any confusion or angst that I may have caused. It was a lesson to me to scrutinize these online web sites more carefully. Again, I am very sorry about this, and just cannot find any other information to prove or disprove any role for cytoxan in CIPN, but I suspect it is more likely due to the chemo drugs used WITH the cytoxan that cause the problem.
Enerva, supposedly only "a few" people get CIPN according to some of the literature I was given before chemo, but as I read more, about 80% of patients who receive a taxane get neuropathy, and of these, about 5% get severe and permanent neuropathy. I am pretty p.o.'ed because I told my MO about my symptoms after the first round, and she basically blew it off, even when I told her my fingers and cardiac function were highest priority for me, and living longer was NOT as high a priority if I lost function, and I wanted something with less than 5% risk of permanent damage, and she COULD HAVE used a less toxic regimen, but she said it was less effective (by about 5% of the population, but for ME, it might have been better as my cancer recurred and progressed DESPITE her toxic cocktail.... oh, dear, I seem to have gotten back on that soap box and anger is seeping out .... have to get back to more positive thinking ....) In any case, I became a royal pain to my MO, made her file a report with the FDA for adverse drug reactions.
I would encourage any and all of you who suffer severe and/or permanent CIPN to demand that your MO file this report. You can file it yourself, but it makes a bigger impression on the MO if they have to do the paperwork! It took my MO a year to do it, but she did finally do it, and then I got a new MO who I trust more.
Sorry for the long rant here....0 -
Linda i thank you for sharing this experience with us and don't be sorry i myself feel angry at been mdx at the beginning. We all have to bent out our stress at some points. I will have you in my thoughts hope you get better.
I ll look into filing a report too.
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yes lol for me i found a small lump the size of a grn of rice and they said it was nothing to worry about, i then still demanded a mammo and a needle biopsy and the results from the mammo show that the lump was probably benign and that there was calcification to be follow up in 6 months, the biopsy was inconclusive so they said go home come back in 6 months, i knew something was wrong but had to wait the next month went and insisted since the lump kept on growing and they took their sweet time to get me another ultra sound, long history short it took them 4 months to get me a core biopsy and voila i had ILC and by the time the Onc saw me it was then all been rush so a week after i saw the onco i had to start Chemo and no time to freeze my eggs and now i am facing infertility and all other issues. Anyway i wish the doctors start listening to us sooner i now lost respect for them and i only hope C does not come back to me so i dont have to see another onco.
I am now waiting for my exchange surgery and after that i will keep my fingers crossed 0 -
Linda: Thanks for double checking. I'm grateful for your input and your posts are always helpful. I too "yelled" at my MO after every taxotere & carboplatin treatment. He said I could stop aftr tx4 & tx5 but because it's a recurrence, the rapid tumor growth, the fact that hormones will be of no use, etc. I gathered my options were limited. I keep hoping it will get better as time goes on but right now I can't even button a blouse or open a bottle of water.
Eli: glad to see you here. I wish I'd had the guts that you did to say STOP. I'll be interested in the Anodyne results. I've got 50 lb blocks of ice for feet when they're not 'burning' & I too have balance issues.
Not really related, but on the good news side - had another lymphodema consult today & doc sees no active LE since the last surgery. Hooray. My two bete noires.0 -
just got an LL Bean catalog. There are some really comfy looking mocs in there. Does anyone find they hold up there softness in the sole over time? Thinking of ordering myself a soft pair.0 -
I'd be interested in what people have to say about footware too. I've had better luck with firmer soled shoes than I have with softer, cushion inserts, or tennis shoes. I know other people have the opposite experience0
